Each year, several thousand infants, children, adolescents, and young adults die suddenly and unexpectedly.For most, a meticulous medico-legal autopsy will identify the cause. In about one-third of these tragic sudden deaths, the "killer" eludes detection and the death is classified as "autopsy-negative sudden unexplained death."The SADS-related genetic heart diseases of long QT syndrome (LQTS), catecholaminergic polymorphic ventricular tachycardia (CPVT), Brugada syndrome (BrS), and short QT syndrome (SQTS) are the likely cause of death in many of these cases. These heart conditions (also known as "cardiac channelopathies") affect about 1 in 1000 people and are highly treatable.

Can we screen for these channelopathies and thereby prevent tragic occurrences of sudden death?The answer is "yes."In fact, we are screening for these diseases and indeed sudden deaths have been prevented.At the SADS Foundation, we recognize that perhaps 50% of the sudden death victims had preceding "warning signs." Proper recognition of such warning signs could reduce the number of sudden deaths significantly overnight.Accordingly, the SADS Foundation strongly advocates for screening programs (general health exams, pre-sports participation physicals) that would probe for the presence of such "warning signs" as exercise - or auditory - triggered fainting/seizures and family history of premature sudden death < 40 years of age or unexplained accidents/drownings.The SADS Foundation is also actively involved in trying to decrease the "knowledge gap" that exists among health professionals by increasing the awareness of and respect for the cardiac channelopathies.

For the other 50% where the sudden cardiac arrest was truly the individual's and their family's first event, there are only two ways to prevent their tragedy - rapid access to automatic external defibrillators (AEDs) allowing immediate life-saving therapy and universal electrocardiographic (ECG) screening.The SADS Foundation fully supports school-based and community-based CPR and AED programs.Whether at the airport or at the athletic field, lives are being saved by effective bystander response.

In terms of ECG screening, this is a very complex issue.The SADS Foundation strongly believes that a common, potentially lethal and highly treatable condition like LQTS deserves screening to be able to diagnose and treat it before an event occurs.However, not every patient would present with a diagnostic ECG and currently, there are serious technical and logistical challenges that preclude the use of ECG as a robust tool for universal ECG screening.Because of this, the SADS Foundation advocates for research funding to enable the appropriate scientific and "real world" studies that are necessary to determine most effective and efficient methods of ECG screening for LQTS. Our patients and families deserve such a concerted effort.

The bottom line – the SADS Foundation’s position on screening to prevent sudden death is “Yes we should, yes we already are, yes we need to do it better